Alan - firstname.lastname@example.org
This will be a familiar story to many, so I'll keep it as brief as possible. Feel free to email me if anyone here in New Zealand (or elsewhere) would like more detail! I am a very fit 65 year old male, with no significant health problems before.
I started getting low back pain and then progressively more discomfort in sitting, a year ago. I had bought a new bike 2 or 3 weeks before, but it isn't clear whether this was in any way the cause, or perhaps aggravated an existing problem. Within a couple of weeks, I could not sit for more than a few minutes and quickly found out that soft seats only made it worse. The discomfort gradually increased and was soon a constant, "24/7" companion. I have never had really agonising pain, more a dull ache which at worst spreads around the buttocks area and under the crotch, bad enough that I soon found I needed some painkillers, especially to help me get some sleep. Then began a thoroughly miserable few months! I had never appreciated how chronic pain nags away at you, you go through periods when you think of little else and literally despair sometimes of ever getting back to a normal life.
Now the too familiar round of consultations began. My GP did a thorough physical check (back, prostate, posture, look for other symptoms etc.) First reaction was to prescribe anti-inflammatories or NSAIDs. They didn't work and I flushed them after a week. A month later I had back X rays, but "no abnormalities" found. I later found that the coccyx had not been x-rayed. In the next few months, I had further GP consultations, stronger anti-inflammatories, more x-rays, every blood and urine test known to man, looking for nasty diseases, all negative. I tried an osteopath, three chiropractors, massage, physiotherapy and acupuncture, as well as a local musculo-skeletal practitioner who has some experience in coccyx problems The osteopath and one of the chiropractors helped with the secondary problems of back pains caused by very poor posture, sitting on one cheek, kneeling or lying down to read or type – you know the story! What was really depressing was that at no stage did anyone give me a diagnosis of a specific problem with the coccyx. Most of them wanted to treat the lower/lumbar region and sacro joint on the assumption that the problem was referred pain. In fact it was only through discovering this website that I was able to decide for myself that I probably had a coccyx problem. My GP never did come to that conclusion
During this period I searched around for coccyx cushions and found you simply can't buy a decent one in New Zealand. I imported one but it didn't work and eventually made one myself from a very firm, thin foam pad with a cut out hacked out with a pen knife. It has become my best friend and goes everywhere with me. (The mark 2 version has a nice cover made by my wife).
Fast forward to October. In looking for help, I ran out of options here in NZ, short of contemplating talking to a surgeon and I was not yet that desperate. Life was pretty miserable as we had to cancel holidays, I couldn't cycle or jog, go to the movies, out for dinners, travel long distances, or even sit and read a book. I spent hours just wandering around the house fiddling around, and more hours walking the streets, because I couldn't do much else which was comfortable. One name that kept coming up as being successful and creative in treatment was Michael Durtnall, in London (see Doctors and specialists in the UK). After a lot of agonising I contacted two of Michael's clients and they confirmed that their experiences with him were very positive and gave him an unqualified endorsement. I contacted Michael and he readily agreed to see me.
I travelled to London in November (not much fun but an aisle seat, some codeine and gin and tonic helped!) and saw Michael within a few days. True to his reputation, he had within 20 minutes reviewed my history, taken a new x-ray (the ones I had didn't show the coccyx!) and diagnosed a problem with the coccyx joints which was clearly apparent on the film. That was a huge relief in itself, to at last have a clear diagnosis, to know it isn't something threatening and to talk to someone who knows what you are dealing with. I had some immediate treatment, and because my stay in England was fairly short, three more sessions in the following ten days. I don't think Michael would normally schedule the treatments so close together but I had come a long way! The treatments were very physical, including manipulation (external – phew!) deep massage and acupuncture, not exactly fun but very tolerable.
When I left England I had gained about a 30% improvement in symptoms, had a challenging set of exercises to do three times daily and felt 100% more optimistic that the problem will be beaten. Michael warned me that it could be a long haul; apparently the instant "miracle" cures are unusual and might happen, for people with more severe but fixable dislocations. Michael says that coccyx problems typically are slow to heal and there would be ups and downs. So it has proven! In some ways I am much improved. With my cushion, I can take long drives and can tackle long flights again and if I get sore I recover more quickly. I have bought a good ergonomic lounge chair which (again with the cushion) lets me watch TV and read for reasonable periods.
On the negative side, I still have more or less constant discomfort (though not pain very often), some bad days and have decided I need further professional help to keep improving. Michael has been very helpful in corresponding with and advising a good local chiropractor who is keen to work with me to resolve the problem fully, and I find a therapeutic massage from a skilled practitioner is also very helpful.
If you are thinking of consulting Michael or someone else with this kind of experience I would say do it! Seeing Michael was a breakthrough for me, as at least I know what I am dealing with, I have a plan to beat it and I know what needs to be done. I get fed up with the discomfort of course, but in its more extreme form it's usually temporary, whereas a few months ago I was heading into depression.
My advice echoes that of many other sufferers.
Get onto the problem early and get your GP to eliminate any potentially serious causes, with tests and x-rays etc so you don't have to worry about what you might have.
Try and bully someone into a proper examination and x-ray of the coccyx. A good chiropractor seems the best candidate. If treatments don't work after a few tries, go somewhere else.
Find or make a cushion to make sitting at least tolerable for a short while. I found it had to be very firm and very flat.
Find out what you can do. I can ski comfortably and walk. I have bought a split bike seat and can now cycle for an hour or so which is fantastic after a year walking around.
Accept that it may take a while to fix but don't accept no progress. I wrote down a plan of action months before I saw Michael – he was the last resort for a New Zealand resident!
Talk to fellow sufferers – it really does help.
It is now almost two years since I first had coccydynia symptoms. This year I have continued the regimen prescribed by Michael Durtnall, when I saw him in London a year ago and once again can only say that he was correct – it is a long slow process! I have been seeing my chiropractor about every three weeks and she applies strong downward (posterior to anterior) pressure on the coccyx joints and also uses a drop table and applicator technique. Together with the vigorous daily exercises and the "rolled towel" rocking exercise designed by Michael, this is gradually but perceptibly increasing the mobility of the offending joint. Furthermore, the arthritic joint is definitely a lot less tender to pressure, than it was several months ago.
I have had another try to break the pain cycle with acupuncture, using a local physiotherapist, but there was no discernible change after 4 sessions so we gave up on that. My understanding is that lots of people of various ages have some degree of arthritis or some wear and tear in back and other joints but that they do not necessarily suffer any pain. The body (and I am convinced this is the case for me) becomes sensitised and the pain cycle perpetuates itself in some way. So, much of my effort has been to try and break the cycle. I am not there yet!
On the positive side, I would say that on average, I am about 50 to 60% better than a year ago. While it is still more or less constant, much of the time I have a kind of background discomfort rather than actual pain, and don't often get really sore. The discomfort seems to be as much from the surrounding area (ligaments?), as from the coccyx. With my home made, coccyx cut-out (hard!) cushion and a very good office type ergonomic chair I can sit fairly well, even if fidgety, for long periods, and I have a car with a good firm seat so can (with the cushion) drive reasonably comfortably too. I still can't tolerate soft seats at all – but with the cushion/pad can do virtually anything such as eat out, go to the cinema, drive, fly, with at the most, some discomfort rather than pain. Now and again I take a paracetemol/codeine dose if I have had a bad day, but that is infrequent and in any case only takes the edge off the pain.
I have bought an excellent bike saddle from Sele Italia (the "Strike" model) which was designed to obviate pressure on the coccyx, as well as the pudendal area and it works perfectly! I am cycling for up to two hours at a time and in fact feel at my best – almost free of discomfort - after a long ride! Perhaps that helps get blood circulation into the ligaments? My chiro thinks it also forces the ischial (sit) bones apart a little and relieves pressure.
I have modified the Michael Durtnall exercises after a few months of finding what seems to work best. I have bought a stepper/cross trainer and find 20 minutes a day is good and provides more exercise than the "knees up" or simply walking.
So, it has proven to be a long haul, improvement is very slow and there are some ups and downs. I keep a diary with a daily "score" for the discomfort level and looking back I am certainly having more 1/10 days and fewer 4 or 5/10 days and vary rarely worse than that. I still get a bit down about it sometimes, because as so many of you know, the constant discomfort, even at a low level can be very wearying. But when I think back to a year or more ago, I have come a long way. I still keep an eye open for alternative treatments because of course I would like to switch the pain off tomorrow. But I have stopped even considering surgery, as with the slow improvement I am making I can foresee the day – probably another year away – when the pain will be almost a memory, provided I continue to manage it, the way I sit, my posture and my daily physical routine.
I am one of those sufferers who had no obvious and recent trauma to account for the onset of pain, and it was only through visiting Michael Durtnall that we were able to narrow it down to an osteo-arthritic coccyx joint and a slight extension – probably a product of a long sedentary career. At my age (66), I guess it could be a lot worse and I continue to be determined to beat it fully in time.
Since my last update, I have had no dramatic change. I would say I have reached a "steady state" where I am managing the coccyx problem, I tolerate a level of discomfort from very mild on a good day, to fairly sore on a bad day, but the bad days are probably only about once a week on average. I get the occasional day with virtually no pain - I enjoy those! Its an odd complaint, because I can get sore for no apparent reason, or it can be something obvious, like sitting on a "bad" seat for even a couple of minutes, or doing heavy lifting or a job requiring crouching down for a while. Because the cause is an osteoarthritic coccyx joint, there is no cure as such, so I focus on managing, and avoiding the pain and on a regimen that keeps me very active and as flexible as possible for my age.
Importantly, the coccyx does not restrict my activities at all, except that I have to avoid sitting activities like kayaking, or riding a bike or motor scooter where I can't use my home made seat pad. We travel, I can drive long distances, go to the cinema, eat out, and so on and I am OK as long as I have my seat cushion. I long ago got over being self conscious about it, and I also am not shy about asking for a different seat in cafes for instance, when they are available. I took up cycling as a hobby over a year ago when I found my marvellous bike saddle (the Selle SMP "Strike" model - not Selle Italia which is a different company). I have completed two 100 km races and was no more sore than you would expect after a long ride, in fact cycling helps, perhaps because it gets blood circulating to the nether regions.
My advice to similar sufferers would be -
Keep active, I find using a "stepper" and cycling to be great for relieving the discomfort. If you have to sit a lot, get up now and again and run up and down the stairs or walk around.
Find a cushion or pad that is right for you and have one for the car, one for home and one for travelling. I found the commercial ones useless - all much too soft, so make them from a sheet of EVA foam, very firm, with a slot in the back and a homemade cover. Keep your car seat very upright.
Find a chair that works for you. I need a flat, firm seat and with a back that keeps you upright or very slightly forward.
I take fish oil tablets. In all honesty I am not sure if they help but they are pretty well proven to be beneficial in a general way.
When I am quite sore ( 3 or 4 days a month) I take a pain killer, but find that the only one that ever has any effect is Ibuprofen or something with codeine in, but even they only "take the edge" off the pain and I have found nothing that actually stops the pain.
I still keep an eye open for a way to break the pain cycle. It gets a bit wearying at times, but I am probably no worse off than many arthritis sufferers and I am not restricted in any real way. What I miss most is flopping out in a big armchair to relax, read, or watch TV!